SEN PARENTS SUPPORT GROUP - Thread 1

[mumofoneAloneandwell]

Hey everyone

this is the original thread that was started for half term:
https://www.mumsnet.com/talk/_chat/5491563-half-term-sen-parents-support-group?page=1

but we’re carrying it on since it’s been helpful

all parents of sen kids are welcome - also those who’s sen kids are now adults!

safe space to vent, share advice, tips and tricks, share good news and bad, and just chit chat and be 🙂

i am a mum of one dd. She’s 6 and is autistic and not yet verbal. It’s just us, no support system so I am thankful for the people on here keeping me company through the journey ❤️

We've had a quiet long weekend as he's not quite himself, I am hoping he perks up soon.

I've struggled to get dd to learn anything, in all honesty, but i have done better at being mentally present and playing more together and getting out and about, which I am pleased with

Do you think she'll pick up new stuff just from doing what you're doing? Being present and mentally more atuned to her?

Fingers crossed 🥺

One thing we have been trying is having a little chat during the bedtime routine, nice and predictable

'I like sand, I like yellow' etc

And then describing the days events in two short sentences

The former she is enjoying!

Oh whats wrong with ds, is he poorly do you think? Its awful when theyre not well, as full on as they are usually!

It's just part of his gradual decline, he has spells like this. He's been asleep for a couple of hours now and I am listening to his heart rate monitor alerting that his heart rate is dipping, how he sleeps through it I will never know!

Oh bless him, hes dealing with a lot - apologies, obviously a cold isnt just a cold for him

Are you worried he might have to go back to hospital?

How are you coping? ❤️

I think we'll be able to stay home, we have good guidelines for when I need to take him in and so far we're not there.

I hate it. It's a reminder of the journey we're on, this is a stark reminder of that. On Saturday he was full of mischief and laughter and today we're back here. I love the good days when he tries his hardest to be naughty and push boundaries (he loves the idea he's being naughty, he has a wicked sense of humour) and at the moment we still have more good times than bad.

@Seawolves sorry to hear, I hope you all manage some rest and ds is better soon

'He tries his hardest to be naughty' i love that bless him and his cheeky personality

It must be so draining, I can imagine. Its good that youve got clear guidelines though on when to take him in

Is he your only, did you say? 💐 its hard work at the easiest of times x

Hello, just popping by to post something that made me so so happy.

DS is at mainstream school with a full time one to one. He has attended an afterschool club since reception (he’s Y2 now) - he’s never had extra support there as he didn’t have the additional support in reception and has always been fine at the club. They emailed DH this week to say that his ‘behaviour’ was becoming an issue at the club and they weren’t sure they could continue to offer him a place. Within 30 minutes the head had called DH to say that she had arranged for DS’s TA to stay with him and that they would pay her to be there!! Honestly amazed by how supportive they are.

Yay to you all @SherbetDipDap !

And how amazing that the head was so supportive x

I’ve just come on here to report that our DD1 has now finally been diagnosed with both autism and with a learning disability.

She’s 17 years old now, so this really should have happened years ago.

How amazing for her - and you!

How does she feel?

When I got my autism diagnosis, it finally allowed me to give myself a break and stop the mental self torture!

Its tough to get the diagnosis for girls, honestly - but it should help her going forwards x

Thank you for sharing this, @mumofoneAloneandwell. It’s really good that your diagnosis helped you in that way.

We always knew that DD1 was ND, it was just about getting a formal diagnosis. She’d already asked in the past whether she had autism, as she has friends who are autistic. She’s currently processing what it means for her, with help from us and from her SEN tutor at her specialist college.

DD1 is also adopted and has a ‘complex profile of needs’, in particular FASD.

For me, my feeling is overall one of relief after years of pushing and waiting after going for the ‘right to choose’ option.

As I feared - one year to go to GCSE exams and he just can't do the English Language exam at all. He said the extract asked a question about 'tension' in the extract and he just couldn't identify what language was about 'tension' which is a thing that often happens, and he couldn't write anything after that.

The 'good' news in some ways is that he can't write anything like this at home either, so it's not like it's specifically test anxiety, meaning maybe we can practice it out. Also I think he needs help at naming and trying to shake off his anxiety - like there's a voice that says 'That question makes no sense!' or 'All my ideas are wrong so I can't start writing!'. I was looking for advice online about this and it was quite interesting - one thing was not to take the negative voice too seriously, ie give it a silly name, make out that it's annoying, not scary, because calling it 'the bully' or 'the monster' or something might just add pressure to 'beat' it, rather than learning to shrug it off.

Is anyone going to the protest tomorrow? It feels important to be there.
https://saveourchildrensrights.org.uk/join-send-protest/

I'm sorry, did you go to this? ❤️

Just reporting that my dd has been giving me hugs and kisses today! Out of nowhere 🤷‍♀️

Its not an easy road but today it feels lovely 🥰

How is he doing @Echobelly ?? ❤️

I can imagine!

I am sorry I've taken so long to respond. How is she doing now? ❤️

He's done all his science exams now. He's feels fairly happy about those. English Lit on Thursday which I think will be another washout. I am trying but he just really doesn't get what he's supposed to do, it feels a bit like Y2 when he simply didn't grasp maths (which he has turned out to be OK at), so I'm just not sure what to do other than spend all summer getting him to learn essay frameworks verbatim.

Is science done now for good?

I feel like youre doing all you can - what does he want to do next, does it involve English? x

No, it's Y10, he has a year to go.

Next steps don't necessarily involve English. He's very good at drama and might consider that but it's not top of his list, which is as well as the English issues would probably put paid to that.

What he really wants to do is Animal Care and we're going to an open day at Capel Manor next month to look at the BTech there. He can get a 5 in sciences, I reckon, maybe manage a 6, which I imagine will help for that. When we visit I want to find out about the Wildlife/conservation BTech as well, and find out how many students go on to further study from each - I suspect DS may be a late bloomer and be able to do well with fewer subjects, so I want there to be something that can lead to further study and I just wonder slightly if wildlife/conservation might open more doors while still keeping his interest in animals.

I think we may have to think BTech as honestly I'm just not sure there's 3 subjects he'll get the grades for an A-level in.

Thank you so much, @mumofoneAloneandwell. She’s doing ok, but blood tests have revealed that she’s very anaemic, not surprisingly, sadly, as her diet is very poor. Thankfully she is taking her iron medication, which she’s refused to do in the past, hopefully we’ll see a difference soon.

She had an epilepsy medication review finally yesterday, when we were offered a cancellation. The doctor confirmed for us that the dizziness probably wasn’t caused by the epilepsy but probably by the anaemia. She’s on medication for that now, which she’s thankfully taking. We’re hoping for her to be residential at college from September, and their main concern has been the epilepsy and her dizziness. Hopefully this will reassure them. She’s certainly never had a seizure whilst at college.

Everything in his own time - he may cope much better without the stress of spreading himself across various subjects tbh, its a lot

Maybe he could mix science and drama? I' not sure he'd need more than a pass in English, or even a willingness to retake?

Animal care sounds lovely 🥺 - i imagine a gentle young man

Wow residential, that will be a huge life change but one i imagine shes now equipped for! Youve done well to get her this far with her medical stuff - its best to go into the world with a clear understanding of who you are which these diagnoses give imo

Hopefully it is just the anaemia thats caused the dizziness, poor thing - is her diet restricted like a lot of nd kids? Mine has a handful of meals and we consider ourselves lucky

Apologies if i'm offline for a bit 😫, i'll still be popping on, just got to focus on real life as I keep getting distracted by mn ❤️